Wednesday, September 30, 2009

Every Season

Every Season

I realized today I have been dealing with IIH (Idiopathic Intracranial Hypertension) for all four seasons of the year now. Winter, Spring, Summer, and now Fall.

It’s quite amazing to me that just a year ago I did not even know what IIH was or could even imagine the hell that would await me the coming year.

I mean really??? So far in the span of those four seasons I have had 8 hospitalizations, 3 brain surgeries, and countless Doctors appointments and test.

MRI, CT Scans, Blood Work, PICC Lines X-Rays…..whewww you name it I’ve done it.

I know more medical terminology than I ever wanted or cared to know.

I now don’t just have one Doctor anymore I have a team of Doctors.
My “team” consist of a Primary Care Physician, Neurologist, Neurosurgeon, and Pain Management Doctor. It only took until August to get this team “right” LOL….but seriously all of these Doctors are the best fit for me and my illness and they communicate wonderfully together which is great being that two are in Baltimore Maryland, one in Clinton North Carolina and the other in Cary North Carolina.

Here’s the update for now, but as we all know things can change but I pray very hard that it stays as is.

I will head to Baltimore on October 6th with Mom for admission to Sinai on the 7th. For this admission they will be placing a lumbar catheter and be doing pressure monitoring and then a drain trail. Basically for 24 hours they will continuously monitor the pressure (ICP) in my head. This will help give them a better idea of what the pressure is actually doing and what shunt and setting to use. After the 24 hours they will drain approximately 40cc of fluid to see if I get any relief from that. (DUH!? The whole things a big duh moment for me but that’s a loooong drawn out issue and well, lets just not go there.)

For the testing I will either stay 2 to 4 nights in the hospital depending on the first rounds results. If all goes as we expect we have a penciled in surgery date of October 16th for new shunt placement.

So there ya go. It can’t get here fast enough.

Not having the shunt currently in place is causing my head to feel like a giant balloon overfilled with air. Not fun.

Let’s face it folks, pain meds are only going to do so much as the problem is pressure. I need the pressure to release out of my head. There is only so much room up there and trust me your body really does not like it when you try to add to much

Tuesday, September 22, 2009

An Apology to Mom

An Apology to Mom

I felt good enough yesterday to take my seven year old and ten year old shopping yesterday with my Mom.

Did I mention that my ten year old was involved and this shopping trip was for clothes?

My sincerest apologies go out to my own mother for every clothes shopping trip she ever had to endure with me.

Saturday, September 19, 2009

It's been quiet

It’s been kinds quiet around here huh? Well sorry and shame on me.

Without the shunt in I am a mess with head pain at times to say the least.

The craptastic Doctor that I walked out on did do me on favor though, he got my appointment with a pain management Doctor moved up by nearly three weeks. So for that I do thank him. In fact, I walked out on him on a Tuesday and had my first meeting with the pain management Doctor on Friday.

Now this Doctor is very well….interesting. I guess that’s a good way to put it. He is definitely not a stuffy clinical type. One of the first things he asked me when meeting him was did I mind if he cussed, I said no, he said great because he was a in the Navy and had the mouth of a sailor. LOL

Before meeting with him I had to sign a contract, yep a contract. Some of the things it stated are that at each visit I will bring all medication and he or his nurse will count pills. I also had to write down the name and telephone numbers of two pharmacies and only use those. I also had to store all medications in a safe, which is not a bad idea. The reasoning for all of this I suppose it the type and strength of medications he is prescribing..there is no fooling around here, none whatsoever.

My first appointment was great, heck it should have been being that it lasted two hours. He was absolutely wonderful to talk with, like talking to an old friend. He is not just about prescribing pills but also about using books, relaxation and meditation to manage the pain. His goal, as well as mine, is to get me to a 3-4 on the old proverbial pain scale that I loathe so much. That is what he considers functioning. Right now most days I stay at a 5-6 with spike to 7-8 and on a really bad day stay at an 8. So for now he has started me on two new medications, one of which I had to stop taking because it sedated me way to much. But as he has said we have just started and we will find the right combination. Did I mention that I really like this Doctor!!! He is one of the few that have not taken a look at my medical issues and run for the hills.

Did you know it is possible to gain 22 pounds in 14 days? Yes, it is.
Did you know that your legs, ankles and feet will swell up like balloons? Yes, they will.

That would be what happened to me.

It started out with some mild swelling then got worse. So I went to the Clinic and unfortunately for me was not able to see my regular Doctor. The Doctor I saw put me on lasik and said if the swelling was not better go to the Emergency room. Yes, I kid you not. That was on Friday. On Saturday, it was not better but way worse. So Mom and I headed to the E.R. at Rex. After blood work, X-ray, CT w/contrast that determined that it was peripheral edema- swelling due to accumulation of fluids. Well duh!! Still no one can figure out why this is happening. By this point I have gained 15 pounds. They put me on Bumetanide along with the lasik and told me to follow up with my primary Doctor. Ahhh yes, me the boomerang.

Well, all is not going well and gets worse Tuesday night. At this point I have gained 22 pounds and the swelling has become pitting edema. That is when you press on my foot the mark stays there. Well Tuesday night every time I would lay down it felt as if someone was standing on my chest. I also had a very wet cough. I would try laying in different positions but nothing seemed to help. It was a tight gripping feeling in my chest and the pain was tingling down my arms. It scared me to death.

So off the the E.R. we go again. (at about 4:00 am) They take me back pretty quickly and at first they are pretty sure I have congestive heart failure, as all the tell tale signs are there. They threaten to admit me and run test after test after test. Finally the E.R. doctor comes in and lets us know that they have ruled out congestive heart failure but that I will still need an echo cardiogram because of all the strain that has been put on my heart by gaining 22 pounds in 14 days. He also calls my primary Doctor and between the two of them they decide not to admit me. Thank Goodness. They also think they may know the culprit of the swelling, Neurontin.

Neurontin is a pain medicine that I have been on for about a month and one of the rare side effects is extreme swelling. Ahaaa!!! Sure enough I stop the medicine and within two days the swelling is completely gone and 17 pounds too!!! Unfortunately I will still need to have the echo cardiogram to see if any damage was done.

Now onto the Meningitis front. I had the spinal tap on Monday. Boy are those things not fun. I mean really how can anything involving a needle going into your spine be pleasant? My opening pressure was 31. Way too high. A normal pressure would be 12-17. The Doctor doing the spinal tap was very nice and wanted to try to drain me down to 25 but for some reason was only able to drain me down to 27. Oh well, that is better than 31.

So that fluid was left to be cultured and I also went and had blood work done to see if it looked clear.

Guess What? I have good news for a change… Can you believe it?

Both the spinal fluid and the blood work came back clear!! The infection is gone. YIPPEE!!!!

So what’s next?

Back to Baltimore of course.

I will head back there for 48 hours of IPC monitoring.

What is that?
Well that is where they insert a probe into my head that will continuously monitor the pressure in my head. This will hopefully give them a better idea where to place the next shunt and what type of shunt to use and what setting it should be on.

After this testing I will then have surgery to place a new shunt.

As of now things are still a little shaky on when I will head to Baltimore. It will either be on the 24th of this month or the 7th of next month. I should know more definite details Monday. Everything depended on my spinal fluid, bloodwork and swelling issues and now that they are all clear we just need finalize with Dr. Williams (we have been in contact with him almost daily, God bless him!) The reasoning for the possible date in October and not the week before is because that is a major Jewish holiday and Siani is a Jewish hospital and they do not do any elective procedures during that time period.

So I think I am all caught up for now and I know I have probably left a ton of things out. I will try to get back to posting more regularlly.

Friday, September 4, 2009

Burning Bridges

Burning Bridges….?

Well yesterday was a very interesting day to say the least.

I did something I have never done before and never in a million years thought I would actually do.

In the middle of a Doctor’s appointment I walked out. I stood up interrupting my Doctor’s toddler like tirade, told him I did not appreciate him talking and acting that way towards me, and left.

Yep, you read that right. The above is not a typo.

And to make it even worse I left my poor mother behind sitting there in the office. (to be fair to me though I thought she would follow, you will see in a minute why she did not)

I know what you are thinking right now… Oh no she didn’t !!!!!!

Oh yes I did.

Here is what happened.

I went to see the Neurologist that I have seen numerous times in the past (technically I am still his patient) and he is actually the one that diagnosed me with Intracranial Hypertension. Throughout the past nine plus months he has said numerous times that he in not an expert when it comes to Intracranial Hypertension and has limited knowledge on it. Okay fair enough. He was also thrilled when I found Dr. Williams (the Dr. in Baltimore)

You keeping up so far?…Good let’s keep going

Well….Since my shunt is no longer, and that is what controlled the spinal fluid, and the spinal fluid is what causes the horrible head pain…well bingo…the horrible, gorilla type searing head pain is back. This is not good. I am having, at times, uncontrollable headache/migraines. Because I am still dealing with the Meningitis and on I.V. antibiotics, I have to wait until that infection is cleared before I can have another shunt placed. It probably will be mid to late October before that happens for various reasons.

Being that Dr. Williams is in Baltimore he felt it would be best if someone locally to me dealt with and controlled the pain aspect of things. Seems logical right? Ummm apparently wrong, wrong, wrong.

No Doctor wants to have anything to do with the level of pain management care that I need and let’s just say that my Neurologist here (NC) was not thrilled with being told I needed pain management care done locally. Hmmm, truth be told he just really did not like being told anything by another Doctor and that’s why this whole ugly matter of me walking out of his office with him in mid sentence happened.

The office visit started out “normal” enough. I met with his P.A. and went over what had recently gone on with me and blah, blah, blah. Like always she went to confer with said Neurologist and Mom and I waited.

He walked in after I had talked with his P.A and shit hit the fan, so to speak from the get go. He felt “Put Down” and did not appreciate some “Baltimore Doctor” telling him how to treat a patient and that “Doctor did not even have the courtesy to call him to confer or anything!!!” He was “Not going to prescribe ------ medication just because some other Doctor said so” and on and on. It was like a four year old having a tantrum. The breaking point for me was when wonder boy jerk Doctor said that “those Doctors in Baltimore are treating me like and Intern” and that he had “already done his internship”

It was like the man had slapped me at that point. I was done. I stood up, tears running down my face, voice shaking and told him “I don’t appreciate you talking to me that way, you have no right”

Whew……got all that.

Needless to say after walking out of there I was a complete mess crying and shaking.

So let’s all take a minute and breathe and assess the situation…

Basically my jerky Neurologist (that’s what we will call him, I won’t name names) felt put down by Dr. Williams. He did not like being told what to do and he felt like he was being treated like a student/intern. I think he felt like Dr. Williams was treating him like a “seconded” class Neurologist without ever once speaking to him.

Well fine and dandy but as a professional he should have dealt with his feelings of anger and frustration before he ever walked into the exam room where I was. He had no right to act like he did towards me, let alone talk to me the way he did. There is no excuse for that. Doctors are not Gods. Plain and simple. I think they sometimes forget that they are working and doing a service for us. Now, don’t get me wrong I am very, very thankful for all the wonderful Doctors that are out there. Without them I would be in a heap of trouble. But some like him need to be taken down a notch or two.

Ok… Now my little four year old tantrum is over now.

So you’re probably wondering what my Mom did when I left her sitting there. Like I said before I really thought she was going to follow me.

After I left she voiced all the frustrations I had but just didn’t have the energy to say.

She calmly and assertively reminded him that I was still his patient and what was I suppose to do from here? How was I suppose to handle the pain aspect of things and mange until my next shunt surgery if everyone (Doctors) continually wanted to treat me like a ping pong ball and never truly take action and responsibility towards the problem?

From the start of this whole mess it has been a battle of Doctor vs. Doctor and Neurosurgeon vs. Neurologist. Huh? You say… Well… The Neurologist says that all my issues need to be handled as a surgical problem and then the Neurosurgeon says that they need to be handled as a Neurological problem. Frankly I don’t give a damm and just want someone to handle them.

Anyway, back to the battle of the Neurologist and Mom

He hemmed, he hawed, and he continued to be a jerk.

Mom held her ground. She said over and over to him “What is she suppose to do?”

She never raised her voice, she never got ugly.

She told him that we had not left his practice because we did not like him or thought he was a bad Doctor, we simply sought additional resources because he had even said that as far as the Intracranial Hypertension aspect of things he was just at a loss of what to do.

This is when he calmed down. I think he finally remembered that he had said that.

He apologized.

Good for him…..

He apologized for acting that way to me. He said that he just was a little floored that the Doctors in Baltimore would just send me back into him without calling him, sending records, notes, ect…. and just expect him to do “whatever” without some form of consultation.

In all fairness, yes I can be fair; I can see his point on that.

However and a big, huge, gigantic however is the fact of how he handled the situation. It was uncalled for, unprofessional, and in my eyes unforgiving.

He had his panties in a bunch over his pride. He felt put “off” by another Doctor. Simply put…..he handled the given situation before him poorly.

So, did we walk away with any pain management care…..nope.

But what did happen might surprise you, heck it even surprised me.

Wednesday, September 2, 2009

Playing Doctor

Playing Doctor

Umm, now that I have your attention….

Get your head out of the gutter. I don’t mean playing Doctor like that…really, I don’t.

For those of you who don’t understand the above well good for you, for the others well…. we shall leave it at that.

They, being the Medical Professionals of Sinai Hospital, have sent me home with a PICC line. Hold up you say!!! What is a PICC line? Let me educate you with a brief interlude of definition.

* A PICC (Peripherally Inserted Central Catheter) is a special catheter placed in
a vein through which medications, blood products and fluids can be given.
The PICC is long, thin catheter (16-24 inches long) made of polyurethane. It is inserted in a large vein in your arm ,near the bend of the elbow, and then advanced to the superior vena cava, a large blood vessel that leads to your heart. A PICC is inserted in persons requiring intravenous (IV) infusions over an extended period of time. It prevents the need for frequent needle sticks for IV insertion since the PICC line can stay in for up to six months.* (taken from Patients and Family Education NYU Medical Center)*

Do you feel so educated now? I know I do!

Yes indeed they have basically entrusted me with open vein access straight to my heart! That may be a little dramatic, well a lot dramatic but you get the idea. Frankly this thing (PICC Line) makes me nervous. I feel like at any moment I may rip the darn thing out. I know I have to be careful with it but still. It also serves as an awful reminder of all that is going on.

The reasoning for the PICC line is that I need two more weeks of I.V. antibiotics for the lovely infection that ruined my shunt and caused it to have to be removed. Meningitis is nothing to play around with so a pill form of anything will not do. On a positive note I do have a Home Health Nurse that comes four days a week and does the I.V. treatments for me and she also taught me how to do them myself. She is just wonderful!

If you could have only been here the first time I administered the I.V. medication myself. Well, I take that back. The first time Wes and I administered the medication. What an absolute riot and intense hour that was. I think that beads of sweat poured down both of our heads as we read and re-read the instruction sheets on how to administer I.V. medications.

Now let’s stop for a moment and see the irony in this situation. Can you believe that they actually make instruction sheets on this? Hmmm neither can I, but they do.

We did get it done though and I am still alive to tell about it so that must say something. As Wes said they should not let people like us play Doctor with things like this….hmmm I might agree but there are still seven days in a week and the nurse only come four so you do the math.